under this perfect sky
with the cardinals nesting
in the forsythia as witness
I’ll load the fire pit
with medical paperwork
from the 1990s
turn to vapor
documentation
of unruly DNA and disease
mix all that heartache with the last
of the wood from our fallen oak
and let it drift
transform into a thing
too ethereal
to hang on to any longer

Seems like January should be a happy time for me and my family as it marks the anniversary of my daughter Sierra’s life saving kidney transplant. Six years and counting. Which is AWESOME-SAUCE, no doubt. That should mean we are hooting, hollering, and celebrating with giddy joy, right? So you’d think.

But here I am, feeling like such a Debbie Downer, a person with a tragically negative nature, as that is not the way I experience this period each year. I’m not thrilled and happy, even though I try very hard to be (and my inability to be happy means I also battle with feelings of shame and embarrassment, frankly , on top of everything else).

I am grateful, deeply, weepy-wild grateful, don’t get me wrong. I’m so grateful Sierra got yet another chance at a period of good, quality life. But, in addition to grateful, I also feel physically ill with anxiety and dread. Like my lungs can’t get enough air. Like my stomach wasn’t really designed to catch food after all. Each January, I seem to end up in this same emotional wasteland, even though I try like mad to avoid it, reconstruct it, spin it round to something sparkly and pretty. My malaise is generally kick started by Sierra’s transplant anniversary, then fueled by the necessity that she undergo her annual CT scan to check for a return of cancer, and an echocardiogram to make sure that her heart is not slipping back into failure.

Having a transplanted organ in her body means Sierra is at high risk for cancer. Very high. Much, much higher than other people who have transplants and are on immune suppression. Her body has already shown its intolerance for being suppressed. The critical drugs she needs to take to help give her the best chance for not rejecting the transplant are, for Sierra, like cancer fertilizer applied to the garden of her morph-proned cells. In 2006, Sierra’s lungs were speckled with lymphoma as a direct result of her immune suppressed status after her initial kidney transplant. To fight that cancer, she had to stop taking her immune suppressants and undergo chemotherapy, losing her transplanted kidney in the process, and nearly her life. Now, she again takes the same exact drugs to keep her second kidney happy that caused cancer to bloom in her system eight years ago. The oncologists would have preferred that Sierra never go back on her immune suppression regime, but she was barely hanging on to life while she was on dialysis after her first transplant failed. In addition to her transplanted kidney failing, her heart failed as well. We were facing the possibility that she need a heart transplant as well as a kidney transplant back then. My daughter would simply collapse sometimes as we walked down a market aisle, or she tried to sit on a chair in a restaurant, opened the refrigerator door.

Our choice at the time was to proceed with another kidney transplant, hope her heart would then rebound, and put her back on the exact meds that caused her cancer in the first place, or let her get sicker and sicker and die on dialysis. That simple. That complex and mind warpingly hard.

What she has lived through, what we’ve all endured during the past eighteen years, I would hope no one would ever have to experience. Dealing with Sierra’s very challenging health issues and crises is even more difficult because she is significantly developmentally disabled, is able to manage minimal self care, and actually endangers and injures herself through her behavior and lack of impulse control. Think about painful and hard and exhausting and unbelievably stressful and maddening and frustrating and frightening and seemingly endless. Now multiple all that horrible by the intensity of ten million. That might give you a sense of day one of this type of journey. And surprise, surprise, the next day is really no easier, nor the next. It’s terrifyingly difficult from beginning to end.

Hey, and this is coming from your unyielding apocaloptimist, glass-half-full girl even when I’m stranded in the desert, a card-carrying perpetually positive realist. I’m hardwired for happy. I got really lucky that way. But that still does not adequately immunize me from being occasionally kicked to the gutter and shoved down the storm drain by the circumstances of life.

So, this is where I sit. January. And yes, I seek help. I implement survive and thrive strategies. I try my darnedest to not let this happen, but happen it does, anyway. The fear creeps in, could all that come back? The reflections on the past prompted by the anniversary, the trips to the hospital, all make all those long gone, very scary, feelings surge.

This January wave that crashes down on me and that is sucking me out to sea will recede, like it always does. Once I get an All Clear report after Sierra’s CT is administered and read, and hear her heart is functioning within an acceptable range, the drowning sensation will abate. The waves will start to soften and stop knocking me against the abrasively sandy bottom. But I will be left rather distant, well over my head, when it finally goes, requiring me to slowly make my way back to that far-off, pretty shore.

All attempts to throw me life preserves, deck chairs, life lines, wooden kegs on which to cling as I work to stay afloat, will be so very appreciated.

First dial the pediatrician’s on call number.
Since the sun still remains only a wish for the day,
leave a message.
Hang up.
Phone the on call pediatric nephrologist and leave a message.
Know the on call pediatric nephrologist will call back first.
Actually, calling the regular pediatrician is only a nicety.
Good form.
Keeping him in the loop, as it were.
We already know without talking to anyone
what we will do next:
Go to the emergency room.

The pain has been persistent throughout the night.
She’s snuggled into me
now crying.
She doesn’t usually cry.
But which emergency room?
Something nearby and convenient
or drive all the way down to Johns Hopkins?
Truthfully, we know the answer to that as well.
We just want someone to affirm our plan.
Know she will confound and terrify
a normal hospital’s medical team.
They will become paralyzed by indecision,
not wanting to make a mistake,
suggest she be transferred.
If we call first, the pediatric nephrologist
can grease the hospital wheels
before we arrive,
hopefully ensuring she gets seen sooner,
there is less time wasted
explaining her astounding medical history
to sympathetic and mesmerized residents.

Next, get her dressed in soft clothing.
Elastic waist bands.
No zippers or anything metal
in case she needs a scan.
Throw an extra set of clothing in a bag
for use if she gets soiled
by blood or other equally unpleasant fluids.
Don’t let her have anything to eat.
They will need her belly empty
for the inevitable tests
or worse.
Allow her only the smallest sip of water
to wash down her handful of morning medication.
Make sure she takes all those pills now,
before we leave the house,
as hospitals never get critical meds in her on the proper schedule.

Pack the boxes filled with her next two days of medication
in the waiting bag.
Add her hourly eye drop bottle,
her iPod and iPad with the drained battery.
Pack the charger
which comes in handy for our own iPhones, too.
Now a computer and cord,
a few granola bars
for when she’s finally cleared to eat
after hours of complaining she’s so hungry and thirsty.

When she’s cleared to eat —
that longed for point
which signifies all the tests are done
and the results are in.
There will be no admission
or mask filled anesthesia.
There will be no blades today.